Home care bill will provide a lifeline for struggling families

My grandfather was diagnosed with Alzheimer’s last summer. His short-term memory was gone almost overnight and he has since lost his ability to carry out many everyday functions, such as bathing and cooking.

He had told us that he’d rather die than end up in a nursing home. So of course we were determined to keep him in his own home. After mountains of paperwork and multiple appointments, my grandfather’s application for the nursing home deterrence program was accepted. We were then told he qualified for 24-hour at-home care.

At first, we were overjoyed. However, we didn’t understand the true gravity of the home care crisis. Our search for full-time home care began in early fall 2021 and continues to this day. Our service coordinator even had us share our struggles on social media to try to find help, but to no avail. After all, how can the state expect people to work as home aides when the pay of $13 an hour is not enough to live on?

Eventually, we were able to find an aide for six days a week, 10 hours a day. This is a far cry from the 24-hour care my grandfather requires, but we were told that because of the severe shortage of aides, this is all we could hope for. For my parents and myself, filling in the gaps of care for my grandfather has become close to a full-time job, on top of our other responsibilities.

My grandfather’s aide works tirelessly to make meals, do laundry, attempt to bathe him, and most importantly, keep him company. The peace of mind this gives us, plus the fact that now our daily visits can mainly be social, as opposed to continuous cleaning and meal prep, is welcome.

Yet the knowledge that more help may never be available is debilitating. With the home care crisis, families like my own have to decide whether to put their loved ones in a nursing home or support them round the clock. Neither decision is easy, but caring for a loved one, especially on top of full-time work, is exhausting.

Growing up, we rely on our parents and grandparents to support and take care of us, and when the time comes the unwritten word is we will do the same for them. This unwritten word has been my personal struggle as I navigate my life as a young adult and my role as a caretaker to a grandfather who suffers from Alzheimer’s.


There is a solution. Legislation known as the Fair Pay for Home Care Act (S5374A/A6329) will go a long way toward addressing this problem by raising the wages of home care workers to $22.50 an hour. A living wage would help eliminate the labor shortage. Plus, such increases will prove to home care aides that their work is important and appreciated. With higher rates, more people would be willing to work in home care, and current aides will be inspired to continue working in the field, despite its challenges. This act would help us find the 24-hour care we so desperately need for my grandfather.

Govt. Kathy Hochul did not include Fair Pay for Home Care in her executive budget. But there’s still time to include it in the budget, which is due April 1. The bill has impressive bipartisan support in the Senate and Assembly. But citizens who care about care need to act: They should contact the governor and their state legislators through the NY Caring Majority — nycaringmajority.org/callnow — and tell them to include Fair Pay for Home Care in the final budget.

Elisabeth Dubois lives in New Baltimore.

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